Thoughts on Visiting

Realizing I have not posted in awhile.  It is because I actually have a topic I need to post about.  Having a topic makes this more like a homework assignment or something.  So, I have been procrastinating.  Well, that, and things have been busy.  We had guests last weekend, and all that snow for me to shovel.  And this week, I am back at work while still trying to balance taking care of Ron and taking care of the house and coordinating Ron’s appointments and transportation.  It was another week of at least one appointment per day for him.  The best one was today.  He had his hospice intake this afternoon, to get reenrolled.  And the intake nurse has been so thoughtful and has already called twice this evening to check in on him and let me know about new medications and recommendations they have.  They are so invested in managing his nausea and pain.  I love having others who also care about Ron and will do everything they can to make sure he is comfortable.

Before I launch into my topic, a short update would be just to say that Ron has not been doing well.  Things are very much the same as described in my last blog post.  He is still vomiting daily and in a lot of pain.  Since I last posted, his pain patch has been increased twice, but with very little efficacy.  He is nauseated and having trouble eating and keeping food and liquids down.  He has been on the couch pretty much nonstop, other than when out of the house for appointments.  This is day 12 of him having these issues.  Needless to say, I have worried about him all week while at work and he is not a happy camper.  However, we are both hopeful that the hospice solutions will provide some relief.  Already, they have authorized him to tap into the liquid pain medications in their comfort care box that they leave at the house, and he says this is helping . . . though it is also making him unable to keep his eyes open.

So, the topic I need to write about is visiting.  Ron is at a point where for him to come to you is not very feasible.  From his last blog post (http://morelikeasseffect.blogspot.com/2012/01/i-am-dying.html), I think many people are beginning to realize this.  Thus, we are being contacted by friends of his who want to come see him, which is fantastic.  But, it also means needing to coordinate who is coming when so we can plan accordingly and make sure there is time for Ron (and me) to rest and regroup between visits.  And, this has made me decide that there needs to be a post about visiting, so everyone knows what to expect and what works for us.

We have been so blessed with many wonderful visits so far and I want to be clear that none of these guidelines are intended to portray that things haven’t gone well or to reflect poorly on the visitors.  In fact, the opposite – things have gone great!  We just want to be prepared to keep things going well.  As we have had visitors, we learn what we can and cannot handle.  Some basic limits that we have realized we need to set for ourselves are, no more than four visitors at a time (less would be better) and visits should be about 4 hours in length.  I will call this the 4x4 principle.  Anything more than this is a bit exhausting, both for Ron and for me.  Obviously, for people who are coming from long distances and for those with whom we make prior arrangements for longer visits or to have stay overnight, this rule does not apply.  And we will definitely make allowances for family and for other unique situations – there is no hard or fast rule here.  But, in general, the 4x4 principle will help us have folks in and out with the least amount of energy drain. 

Visitors should know that Ron’s energy is very low.  Most days, he is not able to go out, even as much as he wants to.  So, be prepared to have some quiet visits with him in the living room.  When he is too tired to talk, we often will put a movie in or watch some shows so he can nap.  If you are someone who gets bored with just sitting, you may want to bring something else to do or plan to run out for a coffee or something.  If he does feel up to going out, he loves it when friends can take him to run a small errand or go to the comic book store with him. 

Visitors should be aware that all plans are tentative.  We never know what each day will bring and sometimes a day’s events can flip plans upside down.  Just know that we may be busy attending to Ron’s illness while you are here or that we may even have to cancel last minute.  Be prepared to be flexible and go with the flow. 

If you are the type of person who wants to help out while you are here, this part is for you.  And if this is not you, don’t worry, we promise not to think you are a yellow rat bastard – you can still just come and hang out with Ron . . . after all, that is the main reason you are coming, right?  But if you do want to be helpful, you can notice things that need to be done and take care of them.  That sounds a bit vague and I guess it is.  See, the thing is, I am not very good about asking for help or telling people what to do.  I am getting better, but I am still not great at it.  I can just generally say that you could run the vacuum or dust or tidy up in the kitchen or bring wood up for the stove or shovel or mop or bring the trash cans up on trash day or anything like that.  Just the general things that keep a household running, any quick task you notice while you are here, will make a difference in my daily workload.  And that difference means more time I get to spend with Ron.  If you are someone that has planned ahead to have some extended time here, let me know and I will try to get together a list or some ideas of things you can work on while he is napping.  You can also run Ron on errands or take him to appointments he might have that day.  If we have not talked about food plans, you should probably bring whatever you like to eat, since there is no guarantee about what we will have here and Ron has not felt up to cooking in about a month.  And I do not cook much and/or don’t often feel up to cooking for anyone outside of me and Ron – no offense . . . I am just maxed out right now on my stress level. 

When scheduling your visit, if you contact Ron and don’t hear back right away, you may want to get in touch with me.  He sometimes doesn’t feel up to answering his phone and sometimes forgets to get back to folks.  He also sometimes forgets when we already have things scheduled.  His meds make his brain foggy.

A lot of the same dos and don’ts you can find or have heard about visiting parents with newborns can be applied.  Give us an ETA and arrive on time or text or call us if you are running late or your plans change; don’t keep us guessing or make us hunt you down.  Don’t come visit if you are sick and be sure to wash your hands if you have been around other people or in public places.  Clean up after yourself.  Don’t judge us when you are here; I may not have the place as clean as I would like or be able to entertain with much gusto.  Use your common sense etiquette about what you would and wouldn’t want if you were in the situation Ron and I are in.  Be kind and supportive.  Keep the environment peaceful and free from outside stressors.

OK.  Enough.  See, I really hate this one and didn’t want to write it.  I feel like I am being bossy and it is not pleasant and in fact feels uncomfortable.  The judge in my head tells me I am going to be seen as this big, mean, rule-making bitch who is full of dos and don’ts.  I want very badly to be a warm and welcoming hostess and to have people excited to come to our house.  I want to be happy and cheerful and to have people want to come back.  But, I just don’t have the energy to entertain or be super enthusiastic about anything anymore.  And depending on when you are here, you may see me actually stressed, like when I get home from work late and there are still a million things to do before I can settle in, plus knowing that there is someone here I feel I should be attending to . . . then you get to see me frazzled.  And Ron doesn’t generally have a ton of energy either, so we are both kind of quiet and dull and off our game.  If you are here, you will just have to accept our imperfect selves and know that you are just here to be with us on this journey . . . nothing more fancy than that.  We just want visits to go smoothly for all involved.  Knowing what works for us and what to expect should hopefully make it easier to navigate on your part.    

It goes without saying that not everyone who wants to visit Ron will be able to make it for a visit.  And it goes without saying that we may not be able to host everyone who wants to visit.  If you are someone who doesn’t know if you are up for the trip (emotionally, mentally, physically, logistically), but you still want to connect with Ron or let him know you care, there are other ways.  You can message him on Facebook or send him an email or call or text.  Know that you may not always get a response, but he certainly is reading or listening to your message and it means a lot to him.  He has especially been touched by the folks who use good, old fashioned snail mail to send a card or letter.  He loves the ones that have stories or memories written in them, so keep sending those.  They are nice to have up for him to look at when he is feeling down and stuck on the couch.  Just please don’t stop reaching out to Ron and letting him know he is still on your mind and in your heart.  He is going through some sad and dark and painful days.  Knowing that people still care is one of the few things that make the days a little brighter.

PS – Visitors:  absolutely positively DO NOT leave without me taking your photo.  This includes family!  I think because I am sad or not quite thinking about things the way I used to, I forget to get the camera out.  But I want to be sure to capture pictures of Ron with the people he loves.  So, remind me to shoot you when you are here . . . with the camera, of course.  J